Busy times

It's been a manic time for us with an appointment literally every day last week.  Where as I try and not let the kids illness totally dictate our lives to a point we have no choice and sometimes it's harder than others!

Ben was seen by our local physio the week before who said he was extremely hypermobile and that he had generalised physical developmental delay.  Not a great suprise.  He is the size of a 2 year old and walks and runs etc as such.  She has issued a lot of exercises for him to do and said hydrotherapy would help once he is free of the hickman line.

Monday saw a meeting with the school head to try and work out where we are up to regarding getting help at school for september.  The changes to the disabled toilet will happen in the summer holidays and we now have a "meeting around the child" booked for the end of may to figure out where everyone involved is up to.

Tuesday was an OT assessment and she agreed with the physio re his physical development delay.  She is getting a special seat for him and a lot of hand function activities to try and strengthen him up.  She will visit school to look at seating and other issues and refer to the wheelchair service for a buggy for outings and going to the outdoor school.

Wednesday was full on with rheumatology and PN clinic at GOSH.  It meant getting him off his PN at 6.30am.  The rheumatologist confirmed that he has Ehlers Danlos type 3 or hypermobility type.  The physio was pleased that his muscle strength was better than when we were in patients in jan.  She thinks once he starts school he will need to go in for the 2 week rehab program again.  He loves the physio and was high as a kite having slept in the car and not long off the PN.  Totally different child in the afternoon as he'd run out of steam from the morning. Lethargic, sitting on our laps and not talking.

He is back to pooing in the night.  probably only 1 or 2 nights in the last month he hasn't.  We were told this was a sign of gut inflammation.  The PN team said he'd put too much weight on!  The volume of feed could be part of the reason for the stooling at night.  We have reduced it as they suggested and things are no better so a new theory needed.  We discussed his lethargy.  After the local physio he slept 3.5 hours, after the park 2 hours and yesterday we didn't even get to the park before he was asleep!  Obviously fatigue is part and parcel of egid but i'd hoped that the PN would improve things.  We were told that it may just be the way he is, that the eds is a factor and also his immune deficiency won't be helping.  They were going to look if we've got an immunology appointment made.  We go back in 3 months.

We were sent for a load of bloods which was a pain as I could have done them myself out of the hickman line in the morning if they'd told me.  They don't like risking accessing the line in hospital so if was eventually got peripherally.  30mls worth.  i'd looked at the forms and they said "intestinal failure".  Even though we know that is what he has it was a shock to read it.  Particularly as it was written by the PN consultant who doesn't like to use that term lightly.  It has become so normal now that he is fed into his heart it was a bit of a wake up call to how dire things are.

We were late home so his blood sugars were in his boots.  Something else I think they need to look into.

Thursday was orthotics for Ben and he was so good keeping still on his tummy, not comfy with a pegj and hickman line, and his casts were done no problem.  Shame the same couldn't be said for my lovely daughter on friday!  45 mintues of screaming and we gave up.  No casts done!  i went from sympathy, to cajoling, to bribery to down right anger and nothing!  So cross as he said her feet are really bad and she is in desperate need of them being done.  He can give her off the peg ones but she really needs them cast.  We are taking her back when we pick Ben's up for another attempt!  Waiting on OT assessment for her as well as her hand function is really bad.

So that is life with us.  It is hard to get people to understand and to a point I have given up.  You learn who your friends are and I am finding more and more that my friends are those with kids with problems.  What I find sad is that I am not asking for sympathy or for anyone to understand it but I find people are either dismissive or say nothing.  My daughter was a twin pregnancy.  We were thrilled as the physical and finnacial costs of fertility treatment were high so getting it done in one go was great.  Sadly we lost her twin at 11.5 weeks.  I was devastated.  The comments we got were amazing!  We live in a small village community and we'd stupidly told people.  I got oh well it will be easier with one, you won't get so fat, at least you've one left etc!  One friend came up and said I really don't know what to say but I am so sorry.  That was all I needed. 

Hoping for a quieter week.  On a very positive noet he managed 4 two hour sessions at nursery on his own!  Very very proud of him.  A real achievement for my brave boy.

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